been a long time

Hello everyone,
sorry I have not been here in a while. My son, the day he was supposed to move to college ended up in the emergency room twice. He is a completely healthy 18 year old who developed severe abdominal pain over about a 24 hour period. I took him to one ER here in the South Sacramento Area. The lobby felt like a cold dirty war zone. People yelling, others just hanging out speaking loudly abuot various personal issues. and meanwhile my son was writhing in pain. The walls were a bland color, the chairs were cold, hard and dirty. We waitied about one hour in that room. Then we were taken back and triaged by a nurse who insisted on giving Eli a lecture on over use and abuse of alcohol in teens. Mind you, Eli had not been drinking and all he could think about was pain relief. Finally we are put in an exam room. Then we waited and waited and waited.. I kept peeking my head out of the curtain and when I did everyne would either look down for turn away, No one would look at me or acknowledge me. Finaly a young MD came in and told us how busy he was and how many patients he had seen since the start of his shift. He then looked at Eli, did not touch Eli, ordered some labs and an ultrasound of his upper gut. Did not really discuss annything with me. And he left the room. We then waited and waited for about another 30 minutes before Eli was given pain medication. He was writhing, pulling at his hair and saying that the pain wass killing him.
For those of you that have children, you know there is nothing worse than seeing your child ill and in pain and you are helpless. I am his mom not his health care provider. I was, just like him, at the mercy of the ER and the MD.

Finally, he was given morphine and was able to calm down and relax. Eli had not slept for two days at this point.
We were sent for an ultrasound of the upper abdomen becasue that is were Eli's pain was manifesting. The ultrasound was negative. There were no gallstones.. (let me tell you that it is very unlikely that a thin, 18 year old male would have gallstone in the first place). They also said he did not have a kidney stone.. I am not sure why they looked for that and oh yeah, the urine sample that he gave which you would want to look at if he had a kidney stone was still sitting on the counter of our exam room. No one ever looked at it for blood or any other abnormalities.
Oh yeah, Elis' white blood cell count was elevated..16 thousand. (normal is below 10 thousand). The MD came back and said that the tests were normal and that he wass sending us home. We asked what we were to do when the morphine wore off. He just looked at us and proceeded to leave the room. The nurse came back to go over discharge and I asked if the MD was going to give Eli anthing for the pain. She said she would ask.. She came back about 10 minutes later and said the MD would like to know what drug I would like him to prescribe.. What the hell! Why is he not in here having this discussion and why is he asking me??

Oh yeah, another thing happened.. Some time during our five hour visit there, One of the nurses said to me that the MDs like working there bcause most of the clients are ignorant and they don't ask questions and therefore the MDs dont have to explain anything.. This hospital cares for many of the poor folks in the south Sacramento area, many form foreign countries. Isn't that a nice attitude?

We went home and sure enough the meds wore off and we were right back where we started from. Eli suffering and getting worse.. We called our family MD who ordered and upper GI. This is where you swallow some barium and you get xrayed while it is moving througn your gut. this is a test for ulcers and stomach irritation. While this was happening ELi was getting worse. Wewere now in downtown Sacramento. So off to another ER.. We went to Mercy General. A hospital with a good reputation and in our insurance plan. Gotta go where your insurance has a contract.
We waiting in the ER which was filled with people coughing, moaning and suffering.. and some where there for minor issues but they had no private health care provider so they needed to use the ER for non emergency care. Afterabout two hours in the waiting room we were taken back and triaged by an ER MD. She was so overwhelmed by the day and the hospital was implementing their new electronic medicall record system so everything takes about twice as long. No fault, just the way it is.. I remember that from our own transistion.
This MD was really concenred about this healthy 18 year old male with abdomincal pain. She wanted some tests and to give him pain medication. The policy is you can not give pain medication unless a patient has a bed. We we were in the hall in a chair. No bed.. no pain medication.. Again Eli was getting worse. Now he had a fever 101.2. In order for Eli to get blood drawn I had to take a wheechair and transport him myself to the lab. Then I had to transport him to the xray to see if the barium was still prevelant in his gut because if it was he could not get a CT scan which is what we should have gotten in the first place. Well , too much barium.. the reason the barium swallow was ordered is becasue it is cheaper and it was easier to get his unxurance to apporve that rather than a STAT Ct scan.
Well that really blew everything.
Finally the ER MD requested a surgical eval.. Eli's pain was now generalized belly pain and he was lookinig really sick. The surgeon came down and took a history and felt his belly and did not think he was a surgical patient but he was going to admit him to observe. Thank god we were not being sent out again.
The surgeon was really upset at the events that had taken place up to that point. Me too.
This was friday at 2pm and Eli was admitted to the hospital.

His white blood cell count wass climbing and his belly pain was worsening. He was requiring morphine every two hours. I was getting very frustrated. Eli was sgetting worse and there were still no answers. Admitted and left alone for the night.

The surgeon returned at about 8:30 on Saturday AM. He touched Eli's belly and said he still did not think it was surgical. Drew more blood and said he would be back the next day. The next day?????
As the day progresed Eli was getting sicker, confused, increaseing pain. I was beside myself. My husband was there too and we were both feeling powerless.
I asked the nurse to call the surgeon. I wanted to know why if he thought Eli wass not a surgical case then why did we not get an internist on the case?
The surgeon did not return the pages.. this went on for several hours. Finally I decided that I wantd to get another MD. I felt abandoned by this MD and watching my son getting sicker was no longer an option.
My husband found out the name of the person that could help facilitate the change of MD and she contacted his vice chief if surgery. Once this hapened and I got on the phone to tell the original surgeon that I wanted another MD that I was very unhappy with his care.. he then stated that he would like to contiinue the case and the he would be more available and speak with me directly instead of getting report from the nursing staff. Appearantly the RN was not giving the information in a way that clearly indicated the change of Eli's status.. Whatever the reason, it is too bad that I had to threaten to fire this guy before he would really step up to the plate.
That night, Saturday, he visited several times and still was not convinced that it was surgical. and another xray still showed barium so a CT was still not an option.
Finally Sunday morning when Eli had a temp of 103.8 and aWBC count of 20 thousand the surgeon thougt it was time too do an exploratory laparotomy. Do you think??? Three days of worseing abdominal pain, fevers and and elevated white count.. what more do you need??

The surgeon went in and in the middle of the surgery he came out to tell us that Eli had a ruptured appendices and that it had probably ruptured three days ago.
No apology, no nothing.. He stated that he needed to go back in and complete the surgery, which he did in about two more hours.
ELi came out of the OR with a catheter, a nasogastric tuble and a drain from his belly.

What a way to start your freshman year.

We spent the next fours day in the hospital and now we are home .Eli is recovering.

I know this has nothing to do with HIV but it has to do with our health care system.

A CT scan is expensive.. but look how much money was spent because the CT was not ordered initially. I am sure the we spent many thousands of dollars trying to figure things out because the CT wass not done . Trying to "save" often costs more in the end.. Just like my disscussion in an earilier post about spending on prevention for HIV rather than treating the actual disease itself.
This does not seem very complicated to me but the policy makers don't seem to see things clearly.

This other part of this story that strikes me is that you have to threaten to fire in order to get proper care. Most people are not as "aggressive" as I am. Most people, once they are in the hospital become passive patients and passive family members. If you are passive bad things can happen. I believe that in a situation like this we are the consumer, the costumer.. where is the costumer service. Why do people in the hospital treat the patients like they are a burden..
We as consumers must stand up and demand excellent care. We have a voice and should not be afraid to advocate for yourseslf or your loved ones.
I do not mean to imply that all hospital workes are like this, we had some terrific nurses. But I should not have to tell people that I am a nurse practitioner in order for us to get respect and information.

budget cuts

For those of you living here in California, you may be aware of the current budget crisis. Included in the budget cuts this year was $52 million from HIV prevention. Here is my question; how can it be cheaper to wait for illness rather then prevent it. The expenses of health care come from those that are very ill, those that did not receive the preventative care, those that did not get the cancer screening, those that did not know they had diabetes because they were never tested early. The expenses arrive from the ER, from late stage care.
So, lets just take HIV. What makes more financial sense? Outreach in the communities talking about prevention has in fact actually cut the number of infections, which would cut the cost of treatment.. which is much less expensive, as you can imagine.
What about testing and finding early diagnoses. Don't you think is is cheaper to provide care early instead of ending up in the emergency room, intubated with multiple organisms growing because your immune system is shot from having HIV for so long and you did not even know it.
A month of antiretroviral therapy is about $1300. a month in the ICU can be over $100,000 depending on your physical needs.
So, what makes more sense? Really.
Take breast cancer. If you get mammograms done regularly and find a cancer before it has spread not only it is less of a financial burden but you are more likely to have better outcomes = survival. The same is true with HIV/AIDS. This should be viewed as a chronic disease that does better when found early and managed properly.
Waiting to spend more later does not seem like financial soundness.
Prevention is the key to health both physical and financial.
The rates of infection have not come down. We must face the fact that actually more prevention is needed. More discussion. Please start talking, talk loud.. Speak with your family, your kids, their friends. Prevention is going to have to come from THE PEOPLE because the funds to the prevention organizations have been cut. It is up to us to get the dialogue going. I can tell you this. we are no where near a cure nor do we have a vaccine. Education/discussion is our only hope and that is where you come in.
SCREAM about AIDS.
I dare you!

another story another love

I want to tell you about a married couple that I have the privilege of caring for. I have known them for about 5 months. They are in their mid-thirties. They are from another country..an Asian country. She is a working professional here and he is a student. They are a delightful couple who exhibit much love for each other.
Several months ago when the wife became pregnant she went to her OBGYN for standard prenatal care. They did her prenatal panel and she tested positive for HIV. This was shocking. Her only love had been her husband, They have been married for many years. She was referred to me by her OBGYN for her HIV care. Her labs indicated that she had probably been positive for quite a few years. Her CD4 cells were kinda low, around 200..(An HIV negative person has CD4 cells from 500 to 1700. below 200 is an AIDS diagnosis and increases your risk for developing some pretty severe opportunistic infections.) It was clear that we needed to test her husband. And of course he too was positive. He also tested positive for Hepatitis C.
It turns out that he had an an anemia diagnosis when he was younger and required mutiple transfusions. Where they come from there is no testing for HIV or hepatitis.

The diagnosis was completley shocking for this couple. He, of course, feels tremendous guilt for infecting his wife. The saddness is very evident. She on the other hand has no anger towards her husband. She understands that he did not know and that it is all an accident. just bad luck, beyond their control.
Now rememer.. her diagnosis came because she was pregnant. we needed to get ther on medications right away to prevent transmission to the baby.
Lets talk about mother to infant transmission. An infant is at risk for becming infected with HIV during delivery. While baby is in mom there is none of mom's blood. The womb is a completely safe place for the neonate. It is during the birthing process that baby comes in contact with mom's blood whether vaginal delivery or c-section. The goal of treatment is to decrease the actual amount of virus that is present in mom's blood to prevent transmission. Every year I have about 3-4 women who have babies and none of the babies have been infected. The rate of infection from an undectable mom is about 1%. Very exciting.

So back to our mom. We got her on meds right away and got her viral amount down to undectable (less thatn 48 particles per ml of blood) We did this rather quicky which was very important beause her baby was actually born at 22 weeks.. He is a miracle and still with us 9 weeks later. and his HIV testing is negative so far.
So this family is dealing with this new HIV infection. Dad just had to start treatment for HIV and in the near furture we will treat his Hepatitis C as well. Both are tolerating their treatment and both have held on to their love. They have chosen not to tell her family whom they share a house with. She is afraid that they will have such anger for him and they did not want to risk that.
In addition, they must have their older son, age 14, tested. I feel confident that he is proabably negative as he has never been sick. But we will not know for sure until he is tested.

I encourage them at evey visit to please get the son tested.

This couple is a true testimony of love. No anger, acceptance of their situation as a family, as a couple. There is a lot to learn from them. Forgiveness, committment and support of one another. I am thankful that they share their experience with me. I am grateful that they have trusted me to assist them in this paart of thier life. I am confident that they will do very well on treatment and live to be grandparents.

This is a fmaily with HIV living a life like the rest of us but with an added appreciation of the life that they havw togetherr. A territfic lesson for me at this time in my life.

plane ride to DC

here is DC, our nations capitol. I had a very interesting conversation with a gentleman on my flight from Sacramento to Denver. He was a church elder and he told me of a conversation that the elders had regarding HIV transmission and drinking from the communal cup. There was concern that the church members could get HIV from sharing the cup at communion. They thought that perhaps they should not allow people to share the same cup.

Fortunately, he actually asked me if it was possible. I was thrilled that he asked and he wanted the truth for the answer. I explained that that would be considered casual contact and there are no known cases of HIV spread via casual contact.

He seemed relieved and said that he would share that information. I did say that I have concerns about the spread of Flu A & Swine by sharing the cup and that they may consider changing for the winter season.

He then asked me lots of questions about HIV in Sacramento and in East Africa.

He was really surprised that there were new infections still occurring. He was surprised when I told him that there are people getting HIV from heterosexual sex. He was surprised when I told him that a growing group of newly infected are folks in the senior years who are now single for whatever reason.. they are returning to the dating world and not taking precautions. The last time they were single there was no HIV.

Let me tell you this. This virus does not care who you sleep with, what your religion is, how much money you make, what god you believe in. All it cares is that you are human. This is the Human Immunodeficiency Virus. It likes human blood and will do what it can to latch on.

As I said before this is spread via sex, IV drug use when folks are sharing needles, mother to baby during delivery and breast milk.

This is a completely avoidable illness. This infection comes from making choices, poor choices.

It does not take a rocket scientist to put on a condom, to not share your rig...

What is it with humans that we can not do these simple procedures to save our own lives.

Why do we live in the place of "it could not happen to me:? If you can help me with the answer to this question then perhaps we will get somewhere in prevention. We must understand the human psychology. Most of our actions are about survival but when it comes to sex and drugs and instincts fall by the wayside. How interesting is that?

the patient that touches my heart

I have a gentleman that i have now been caring for for about two months. He is an elderly gentleman from a country in east Africa. He wears a top hat and a suit to every visit, even when he does not feel well.
He is small, weighing about 110 pounds. His skin is dark and his teeth are bright but stained. He has been HIV positive for about 6 years. His source of infection is unclear.. and really it does not matter.. his wife is also HIV positive. He has moved here to live with his son. His son is a delightful loving respectful son. You can see the love these men feel for each other when they look at one another.
My patient arrived quite ill, severely anemic requiring transfusions, several times. We have shifted his medications.. we have treated his pain so that he is feeling well. comfortable.

One my second encounter with this patient he stood at the end of our visit and he placed his hand on my chest and he called me "mother". His son said that was a nice respectful term for his healer. I began to cry. He moved me deeply to my core. I have never had that deep sense of connection with a patient. Even though we do not speak the same language, HE really let me know that I AM CARING for him. That he can feel cared for by me. That gave my an enormous sence of value and self worth.
This most gracious and kind man was thanking me for careing for him. HE changed my life that day..he gave me strength and he reminded me why I was called to this role. I have a deep love for this man and I am so grateful that he has arrived in my life. Whenever he enters the clinic my soul is fed. my heart is reawakened again. I thank my friend for the smile he gives me at every visit. He is my gift.